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Overall I'm very pleased with my jpouch. However, since takedown I have been bleeding into the pouch. It has caused me to have blood transfusions and regular iron infusions. Basically, I bleed to the point that my blood counts drop to very bad levels and then I have iron infusions to bring them back up to their appropriate levels. I last anywhere from 3 weeks to 2 months in between iron treatments, and then each iron treatment takes anywhere from 2-5 consecutive weeks. It's administered intravenously once per week. The cause of the bleeding is severe inflammation surrounding the staples used at the site of the reversed ileostomy. I also had cuffitis which has been healed through the use of Canassa. I currently receive my treatment from my doctors at Vanderbilt in Nashville, TN. I'm very confident in their abilities. You don't get much better than Vandy. Dr. Shen, from the Cleveland Clinic has also been a consultant on my case as what I'm experiencing apparently is very rare. Treatment thus far to stop the bleeding has consisted of taking a variety of medications and in different combinations. So far I've taken Budesonide, Cipro, Flagyl, and Tindamax. At the recommendation of Dr. Shen they have also tried steroid injections at the bleeding source. They are expecting to have to do that another 1 to 2 times before determining if it's going to work or not. If it doesn't work they are going to try another couple medications. And as a last resort there will be another surgery to rework the ileostomy reversal. That's the long way of getting to my question for the group, and that being, has anyone else experienced chronic/ongoing bleeding post takedown and what did you do to get it to stop? Any help you can provide would be very helpful. The low blood counts I suffer from cause constant fatigue, risk of heart failure, and limit my abilities to do many things I enjoy. Not to mention the neverending hit to the wallet. All of these things have been adding up over the past two years since takedown making for a exhausting, worrisome experience. If you have any suggestions I'm willing to try anything. I know this is a wonderful, helpful community with a variety of experiences to draw from. Thank you!

Jeff
Original Post

I realize this post is over 2 years old, but I'm in a similar situation and I wonder if your symptoms have resolved, and what treatment finally worked. I have been bleeding with every BM for over a month (takedown Sept. 14) and I will have a scope this coming Friday to check it out. They are going up past the pouch to the point of ileostomy reconnection. I have been on Cipro and Entocort for 2 weeks without improvement. 

Did they ever figure out how to get your bleeding stopped? How are you doing now?

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